Never give up, never surrender. No matter how defeated you might feel, know that there are so many moments like this where you will find strength. But only if you learn to look for the small wins… Even the smallest of wins add up over time to create momentum. And my friends, momentum is all you need… I love you all. – Michael

Facebook – 06 June 2014, 8:36am

Dad – vs. – Chapter Three

I spent the first few years hiding from my family. I was filled with so much shame about what was happeining, and shamed over all the things I couldn’t do. I didn’t want them to see me as weak, and in the early years I didn’t want Aedans last memory of me to be as a severely crippled and weak Man. I still fight it, as my ego wants to show my Son that I’m Superman, capable of anything and I would have wanted him to see me as big and strong. Always. Perhaps some of you can relate.

Through this journey, I’ve been forced to learn far more humility than I imagined, and I’ve learned that I have to be honest with my Son now instead of hiding it. Or at least more open than Id like.

If you read my last post, I spoke of my inability to read chapter books like Mama does. But Aedan knows that trying something you can’t do almost always makes you better. During that last conversation I told him we’re going to read a chapter book. We might not get through much, but we’re going to do it.

He, being my Son, turned it into a game. Like the TV show ‘Man vs Food’.

He brought the book Mama was reading, she left off at Chapter Three.

As I started to read, he noticed I was struggling and moving the book (my eyes change focus continualy) to see. He asked what happenswith my eyes, so I told him. They hurt from strain to see the small letters, the double-vision becomes very noticable when focusin on smaller things and my eyes get tired, so soon the page looks like nothing but a black blob. He said ‘It’s okay Dad, we don’t have to read this, let’s go back to ‘Hop on Pop…’ he’s so sweet.

No I said. We may have to keep taking breaks, but we’re going to read until I can’t read a single word. And we did. During our frequent breaks (every half page or so) he’d chant ‘Dad vs Chapter Three! Go Dad!’

It took about an hour, we got through about 8 pages. We checked and turns out Chapter Three has 12 more pages! *%#&!

He thought it should be time to quit. But nope, we were having a good time. And I wasn’t done yet. Another 20 mins and we finished another page and a half. But we went well past the point where I or he thought we’d get.

My old ego didn’t like failing in front of my Son. But the new and real me? I loved every second. I learned that my Son sees me struggle, sure. But he also sees that I never ever quit. He is so supportive and we are learning together to make a great team. And he’s the best cheering section a father could ever ask for.

Chapter Three won this round, but I’ll be back!! Grrr…

I don’t have access to my Blog still, so I’m posting this here. I know it’s long. But I also know that I would have needed to read this when I was at my worst.

Aedan taught me a valuable lesson that I want to share.

He doesn’t care if Daddy can’t do some things, or can’t read him the books he loves. He just wants his Daddy, in whatever shape I’m in. And he’s proud to be my cheering section.

Your children love you. Sick or not. Please, take this to heart and work on losing the shame. It is a dark Evil that will eat you alive. Take my word for it.

Thank you for reading, and go out and do something today that you’re sure you cannot. I began Chapter Three convinced I could get through it. And next time I fail to finish, I will also have been convinced I could. Just live my friends…

I am the luckiest man in the world. No matter what my physical state would suggest.

I feel like I’ve been locked in a mental prison for so many years. When I have words, I’ve enjoyed posting my thoughts. Usually its filled with things I’ve thought about deep inside for years now. And usually I’m talking to myself. Reminding myself of what I went thru and/or the strength its taken. It makes me feel good inside to put out words that make sense, but also it serves as a reminder when I feel I’m ready to give up. I re-read my words and it forces me to find the strength to make it on more day. It is my hope that posts like this reach your inner fight too.

Facebook Post – 12 August 2014

Its not the size of the dog in the fight…

I am quickly approaching my 6th year anniversary of being poisoned and metabolically destroyed. Lately, I have been on a another downward cycle, my body has clearly suffered a heavy toll thru this fight. When I hit the wall and lower my baseline, each time it takes me longer and longer to get back to where I was before hit he wall. Usually I don’t mae it back to that baseline and from that point forward, the degredation is (so far) permanent.

Daily:

While my baseline can vary from day to day, or even throughout the day. But generally my mind is slow to process, the world is still too fast. I get lost quickly in a 2-way conversation and still cannot reliably care for my own needs. My vision is doubled and blurry on GOOD days, most days my eyes just hurt. There is a disconnect between what my eyes see and what my brain processes. Its fairly disorienting. Feels similar to closing your eyes and moving around, and/or closing your eyes and talking. But with images. Very strange feeling to describe.

My body is in tremendous pain, multiple types.  I can only describe the pain(s) as being in layers. Each layer distinctly different, covering my entire body in indescribable pain including all joints, all tissue, even my face and eyes hurt. My entire body fatigues quickly – nothing like being ‘tired’. My body becomes very heavy and many of my supporting muscle groups are weak, shaky and some simply fail. Once that happens and I hit the wall, I need the world to stop completely. I become unable to communicate what’s happening or communicate my needs effectively. I barely make it thru an uneventful day most of the time.

BUT I HAVE MADE IT THRU 2,120 DAYS SO FAR. It’s like Groundhog day in reverse, everyday somehow harder than the last. But I got up and I have faced it head-on, everyday.

I wake up to this reality everyday. Then, I must also fight to get medical help – which has been almost non-existant, fight to handle whatever business the world forces me to deal with. Fight to find money for Medical care, treatments, co-pays, supplements, organic foods, electricity, water, phone, etc. I am at a substantial mental disadvantage but I still try. Every day.

My babbling until this point hardly describes what I go thru everyday and the logistical roadblocks caused by my condition. But I’m trying to share what I can to make a point here.

I know many of you feel as if you can’t go on even one more day. But I also know I’m among the hardest hit by these drugs. And if I can make it thru each day, you can too.

Don’t get me wrong, it isn’t easy. And there have been many days where I would want to just give up. But I can’t. As it turns out, that isn’t my style. And it dosnt have to be yours either.

Early on I would think about the many times I thought I couldn’t possibly live until morning. Many times I thought for certain I had come to the end of my life. But, clearly the end hasn’t yet come. And the more I thought about the times I’ve lived thru impossible odds, the more I realized ‘this too shall pass’. This morning felt impossible to me, but I knew the antidote… I thought of some of the times where I was convinced my time had come – convinced I couldn’t take another step. But yet, time and time again, I found the fight. Realizing my strength helps me get through times I deem ‘impossible’.

I now know there is no such thing. I know that the only thing that will cause me to fail is… wait for it…

ME.

I realize this is long and I’m not able to make this neat, tidy and sensible. But it is my hope that through my experiences you will find hope and that you will find the light. It breaks my heart to get so many messages filled with despair and fear. I promise I am always here for you, but really. If I can make it, you can and you will.

Are you going to live or die today??

EVERY MORNING I make a choice. Every morning, I choose to live. I expect you to do the same. Know that when it gets hard, I am here. But it is YOU that first must decide.

It isn’t the size of the dog in the fight…

Its the size of the FIGHT IN THE DOG.

Decide. Right now, decide to fight.

Your Brother in fight,

Michael

This picture hits me hard. I think of myself as Superman – I feel 10ft tall and bullet-proof when I walk upright now, or when I do my own IVs… or when I read a few pages of a book to my Son. Seeing myself like this hurts. Its hard to look at this and feel strong. I have been filled with so much shame as a Man over what’s happened.

In May, I was in Washington DC to speak about what happened to me. There was about 50 of us. When I or any of the others showed this picture to the Senators, the reaction was something I didn’t expect. They saw what this drug has done to my body and they were heavily affected by this picture. I guess I either haven’t yet faced it, or perhaps its just that I’ve spent so many years noe convincing myself I’m unbreakable. While that’s served m ell, I also need to face the truth. MY truth.

I am sharing this here for several reasons. None the least of which is that I must stand in my truth. Levaquin has nearly destroyed me and unless I/we have the courage to share our stories, this will never stop.

If you’re reading this, chances are you have been poisoned by these drugs too. This is almost 6 years after my poisoning began. I have fought so hard and lived through unphathomable torture and it shows.

It is my hope that you see this and instead of sad you get inspired. This does NOT have to be a death sentence, and together we’ll get through this.

I have much more to share. I still don’t have internet access so some of the videos and writings will have to wait. But until then I can and will be sharing quite a bit. Check back soon.

Also, I have offered this picture up to the floxies on facebook to use and I extend the same offer to you. Its been used to get Dr’s to take us seriously and from what I’ve heard, its been very useful for others in getting Dr’s attention. If you feel showing this at your next appointment will help get attention, you too are welcome to use it. Leave it as is with my name on it is all I ask.

Fight on my friends.

I haven’t had internet access since January so I’ve been posting to my Facebook account instead. I’m going to try a different posting method, let’s see if this works.

Posted to my Facebook account 23 May 2014…

Lessons for my Son:

Lately, he’s been asking me a lot of questions about my body and mind, and about what’s happened to me. Amazingly, he seems more interested in how it makes me feel inside. This morning is one of those mornings.

We talk about my eyes and brain, for instance. He knows Daddy can’t read chapter books like he and Mama can. He has noticed that I can only read short books, and books with few words and big letters. He notices how Daddy gets weak or sometimes can’t do what I was able to do the day before or even hours before. He asks if I get frustrated, he’s asked if it makes me sad that I can’t do a lot of the things I used to or do the things I want to, when I want.

I want to be open and honest with my Son. I think that’s one of the most important things I can do as a Man – he will know the real me. Not give him an unrealistic image of what a Man is and therefore not have unrealistic expectations of himself. If I have a hard time, I let him know. But I also show him what it is like to never ever give up, and to try my hardest. Every time, every day. Most important I want to show him how to hold his head high through it all.

But… I then explain how hard I try and even though yes, I do get sad sometimes for things I can no longer do, I cannot let that bother me. When those thoughts come, I must let them go just as quickly.

“Why Dad?”

“Because Mijo, if I spent my energy on emotions that do not serve me, I will have already failed.”

I remind him of the earlier days when I couldn’t walk or move. Days when I couldn’t pick him up or even tickle him. And as for reading, I remind him that there was a time a few short years ago when I could only read him books meant for infants.

“Point is Mijo, I’ve come a long way. And sure, its frustrating to Daddy when I have to stop reading the book before we finish. Wouldn’t you feel sad I you couldn’t read your little boy a book?”

“Yea dad, that’d make me feel sad for sure.”

“But Mijo, what if instead you think of how far you’ve come? Things you could do now that you couldn’t before?”

“Id feel good Dad.”

“Exactly. And unless I continue to try to do things that I cannot do, or try things that are ‘too hard’, Id never get better. Always buddy, always try. Even if you’re sure you can’t. Try, but start with the belief that you can. That is where most fail. Whether you think you can, or think you cannot: You’re always right.”

This is the conversation we had in bed this morning.

My little boy broke his collarbone on Monday. Watching him go through this has been painful as a Father, but heartwarming beyond measure as a Human Being. I see him try to do things he’s sure he cannot. Like removing clothes to go to the bathroom himsef now, or drawing with one hand, or getting on/off the couch. He’s finding ways to work with what he has, and he’s not sad about his pain and inabilities. Instead, my Son is proud of himself each time he ‘makes it work’.

I DID IT DAD!!!

The lack of tears is not what makes you strong my son. It is your heart, your inner fight. And you make me proud to be your Father. I love you Mijo.

Hopefully there’s something in here for you grown-ups…